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UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
I once wrote an article for a local rag bemoaning the state of the town’s railway station. When, two days later, the council announced plans for its complete redevelopment I expressed my shame and guilt to a friend for not having known this.
“Simon,” he said after a long pause, “it sounds like a simple case of the power of the press.”
In a similar spirit I can tell you that, on Monday, I chaired the first meeting of the new UK Clinical Trials Gateway (UKCTG) Project Board. Then, overnight yesterday, UKCTG underwent a face-lift!
The ‘Gateway’ is the website and downloadable ‘app’ that the UK Government launched as part of its Life Sciences Strategy in November 2011 to help patients and carers access easy-to-use information about clinical trials. In January this year NIHR published a report of public feedback on the site showing that 88% of people would recommend it to a friend. They also identified a number of important improvements they would like to see including being able to find out about trials recruiting in their local area.
From today that’s possible.
You can now search by condition on the ‘Gateway’ and it will provide you a list of clinical trials and their location(s) together with an easily navigable ‘Google Map’ so that you can see what is close to you where you live. You can also filter your search results so it shows only those clinical trials that are recruiting participants (as opposed to all relevant trials including those that have closed). And the site has generally been cleaned-up so it has a simpler home page and information is presented more clearly.
The same changes will appear on the mobile/tablet ‘app’ version in January I suspect.
Because the Gateway pulls data from a variety of different databases where trials are registered – and the information provided at registration by researchers is not always accurate or comprehensive – what you can access via the Gateway is not full-proof by any stretch of the imagination. So, for instance, it might be that not all the sites (usually hospitals) recruiting for a trial will be shown. Best thing to do if you have got a question which isn’t answered on the UKCTG site is to contact one of the sites listed for the trial you are interested in and talk to your doctor of course.
People will also rightly point out that there are other sites which provide similar ‘local’ information. But I am reminded of the response of the heavy rock musician who was being goaded by a journalist to slag off a boy band: ‘There’s room for everyone,’ he said.
Fact is it’s a start, even if the starting point feels like we are doing the never-ending and proverbial paint job on the Forth Bridge by beginning in the middle rather than at one end of the structure.
Anyway, feels good to be able to finish the year with the ‘Gateway’ having responded to a priority clearly expressed by patients and the public as well as researchers. I am looking forward to the Board supporting more improvements and setting a clear vision for the Gateway over the course of 2014.
New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?
This week, patients got a couple more options for finding out about clinical trials they can take part in.
Patientslikeme (which was launched in the United States a few years ago) has unveiled its new new clinical trials site which you can find here. Patientslikeme is capturing a lot of attention here in the UK and one can see why. Although this is still very much a first generation clinical trials site for so-called ‘willing patients,’ I like how it presents options and choices. Its interoperability with other parts of the Patientslikeme site (including the option to join other patients online) is also to be commended. It is well worth a look.
Meanwhile in the States a new site called Reg4All has been launched by the non-profit Genetic Alliance (not to be confused with the UK’s own Genetic Alliance). This one’s a register, inviting you to join others online and share as much as your personal health information as you so wish, to ‘help spark health innovation for all.’ It’s interesting how heavily they plug patient confidentiality with the privacy controls reported as being ‘unprecedented.’ Other than not signing-up at all of course.
Don’t forget there is also the Government’s very own UK Clinical Trials Gateway (UKCTG) whose future development I am very involved in, as well as ClinicalResearch.com, TrialReach, HealthUnlocked, YourTreatmentChoices . Funny how almost all of these sites miss out the spaces between the words in their titles isn’t it? I wonder what that is all about.
Anyway, the market of organisations competing for the attention of patients entering clinical trials gets busier by the day. This seems a healthy thing to me on the one hand. On the other, I feel patients will want to see a ‘coming together’ at some point. Although not necessarily in the way that you might assume; it might take many forms in fact.
Agreement on some common principles and standards for how to operate as in the manner of a learning health system (there are some interesting precedents in the US for this with respect to data use)? Partnership, merger or co-operation? Perhaps formal regulation (by the Health Research Authority)? But, most of all, integration with their care and treatment in the NHS and how this is provided. There will also be a growing demand public involvement in how they work; more than any of the above providers can currently demonstrate. Also,demands for reassurances over the ‘patient experience,’ with the AllTrials agenda just the tip of the iceberg in how I predict people will increasingly set higher expectations with clinical trial providers, and those who recruit on their behalf, before signing the consent form.
Finally, here is a brief interview with Scotland’s Chief Scientist, Dr Andrew Morris. He talks about the importance of research being integrated into NHS care and treatment if we are to grow cohorts of patients who are active in research and the building of systems that enables that. He references the well-known DART initiative in Scotland involving 7000+ people with diabetes.
I’m off to watch the rugby now.
Today’s headline is taken from the menu for my Indian take away last night which talked of ‘exortic sauces.’ A spelling mistake it might be but I was rather taken with the idea of my curry sauce exorting me to savour its spices.
In a similar fashion do I feel the desire to devour all the exciting stuff that came out of my albeit brief appearance at the PatientsParticipate conference last Friday. It is the sort of science engagement that exorts you to explore, learn more and wonder…..
The US site PatientsLikeMe featured quite heavily in my session so I decided to post the link again for those who wish to follow the trail. For those new to it, patients can share their experience with others and this ‘data pool’ is increasingly becoming a bank for patients and researchers to find eachother with a view to trials etc.
The blog is pretty good too if you are happy to excuse the new media terminology about ‘mash-ups’ etc. It’s a real feast if I may to continue the food analogy.
[by the way if people have links of similarly interesting links I would be delighted to add them on the site)
PatientsLikeMe seems to be coming out daily with announcements about new ways in which people are using the site and also the partnerships they are forging with others and some of you may have views on the work they are now doing with pharmaeceutical companies.
Yesterday I had my first ‘induction’ meeting as Chair with INVOLVE’s excellent Director, Sarah Buckland. Although we didn’t talk about social media and PatientsLikeMe as such we did discuss the long-standing bias against user-controlled research and the degree to which science has not supported research and innovation led by it’s ultimate users, recipients or customers.
There comes a time when all traditional hierarchies are turned on their head by force of circumstance or societal change, change which they are unable or refuse to embrace. Coming away from my conversation with Sarah I wondered whether we are on that course now where social media and technological advances essentially mean that the tools are increasingly there for the pioneering patient or extrepreneurial member of the public to take control of their participation in ways that have never been envisaged.
To me, that’s terribly exciting. Challenging, but exciting.
To finish, and since I am in subversive mood, I thought I would finish by also signposting you today to Alice Bell’s latest blog which talks about the I’m a Scientist initiative that has been run by some universities. I am not going to steal her thunder by reiterating her story of what happened. But it sounded great fun and one of those instances where everyone comes away inspired by the connectivity of it all. She asks for suggestions of similar ideas – I quite like the idea of a Krypon Factor style contest in which combined teams of scientists and members of the public are pitted against one another to solve problems.
Now you know why I never became a tv producer.